Tag Archives: epilepsy

Established in 2000, the Czech National Disability Council (CNDC) has aimed to advocate, promote and meet the rights, interests, and needs of disabled people in the country, regardless of the type or extent of their impairment. It has collaborated with the state administration and local government at all levels as well as with organizations and institutions working in this field at both the national and regional level.

It is the advisory body of the Governmental Board for People with Disabilities. It is a member of the governing board of the national development programme Mobility for All. It is a member as well of the joint committee for the Programme of Development and Renovation of Public Transport Vehicles, and the two Boards of the Association of Cities and Municipalities.

Aside from those, the CNDC collaborates actively, too, with the Association of Regions of the Czech Republic, the Association of Employers of Disabled People in Czech Republic, and the Trade Union of Employees in Health and Social Service in the Czech Republic.

Comprising it are member organizations, among of which is the ARCUS Cancer Centre that was founded in 1993. It has helped cancer patients and their families since then under the chairmanship of John Koželská, winner of the Olga Havel signatory of the Paris Charter against Cancer.

There are also organizations specifically designed to cater Czechs with human immunodeficiency virus (HIV), cystic fibrosis, Charcot-Marie-Tooth, Huntington Disease, chronic diseases, and deafness.

The Czech AIDS Help Society was established in 1989 as a self-support initiative of PLWHIV [people living with HIV]. Through finances from grants, donations, and fees in its own activities, the Czech AIDS Help Society continues to promote HIV prevention and awareness through anonymous and free-of-charge HIV testing; shelter accommodation services to PLWHIV in its own social center, the Dum Svetla (Lighthouse); on-site HIV/AIDS counseling service in Prague and Ostrava; a national toll-free HIV/AIDS hotline; legal assistance to PLWHIV that were discriminated against; and anti-stigmatization campaigns.

The Czech Cystic Fibrosis Organization was founded in 1992 by the parents of the children who has it. Originally, it was called the Club of Parents and Friends of Children Cystic Fibrosis. The parents pass on practical experiences to each other; in early days, the club voluntarily works for several mothers of sick children. It still involved in “active” parents till this day to handle the provision of the patients, and, together with the staff, promote cooperation among the center; inform the public about cystic fibrosis; protect the legitimate interests of the patients; secure funding for the activities of the club; subsidize the necessary equipment; and support families of CF patients with low incomes financially.

Society CMT, on the other hand, is an association founded in June 1999. Its objective is to defend, promote, and fulfill the interests and needs of those sickened with Charcot – Marie – Tooth, a neurological disorder that affect the nerves outside the brain and spinal cord, in coordination with state and local governments.

Widowed by the American folk singer Woody Guthrie who suffered from Huntington’s Disease, Marjorie founded an association for those with the rare inherited disease as well. It—the Czech Huntington Association—started to set up a self-help organization in May 14, 1991 to “map” the cause of an illness in Bohemia and Moravia characterized by progressive dementia, abnormal posture, and involuntary movements.

To prevent the “diseases of civilization” (e.g. cardiovascular disease, diabetes, asthma, allergy, oncological diseases, epilepsy, multiple sclerosis, severe renal and metabolic diseases, osteoporosis, vertebral diseases, etc.), the Union of Persons Affected by Chronic Diseases in the CR spread its network of 330 organizations in 290 towns and villages in the Czech Republic with its 55,000 members.

Those with hearing impairment, meanwhile, can go to the Czech-Moravian Unity of the Deaf. It was founded in Brno in 1998 and operates in Olomouc, Breclav, Jihlava, Pilsen, and Prague, aside from there. Its aim: unite the other associations for the hearing-impaired in the region to “effectively promote their mutual cooperation.”

It is, thus, necessary, beneficial, and practicable to integrate special education (SPED) in the basic and secondary curriculum of every country.

One doesn’t have to finish grade school and high school first before being given the option to study SPED.

A certain illness could be discovered and considered a disability at any given moment, too.

SPED would be the saying “prevention is better than cure” practiced.

Currently, 19% of the less educated people have disabilities1. Eighty percent of the PWDs, too, live in developing countries2.

Disability rates are significantly higher, too, among the member countries of the Organization for Economic Cooperation and Development (OECD) with lower educational attainment.

“We have a responsibility to ensure that every individual has the opportunity to receive a high-quality education, from prekindergarten to elementary and secondary, to special education, to technical and higher education and beyond.” ~ Jim Jeffords

Judging from how persons with disabilities (PWDs) in Moldova can still study, defend themselves, and live independently, the UN Convention on the Rights of Persons with Disabilities (CRPD) reported that the said country ’has made significant strides to further advancing the rights of children and adults with disabilities in the country’. Its education system has become more inclusive and community-based services have been developed.

Many, however, continue to be denied the support they need to be fully included in the Moldovan society. Many processes regarding the educational system and community-based programs are far from complete, too. In particular are the 1,716 children with mental or intellectual impairments that remain in segregated educational institutions. Not all of them are receiving support they need to access inclusive schooling.

About 3,000 to 4,000 Moldovans are ‘stripped of the right to decide for themselves, and are under the control of guardians’. Many were reported to be leaving PWDs in closed institutions against their will, using the disability allowances of the latter, controlling their assets, and prohibiting them from basic socio-legal acts.

The PWD Forum could only hope that the finding of Dr. Raman Sharma from the University of Adelaide’s Robinson Research Institute will lessen cases of intellectual disability. Together with some researchers from Europe, he has discovered the “novel gene,” which when mutated, causes intellectual disability in 1 in 50 individuals.

“We have identified four mutations in the THOC2 gene in four families. The defected gene is found in males who have an intellectual disability – females in the families are carriers of the gene mutation but are not affected by the condition. Protein coded by the THOC2 gene is part of a large protein complex that is fundamental for all living human cells and essential for normal development and function,” Dr. Sharma, lead author of the paper, was quoted in the American Journal of Human Genetics.

To date, Dr. Sharma is poised to know more about familial gene mutations.

“But that’s just the first step. Before we can develop a treatment for a condition, we first need to understand what is going on in the body and discover how a specific defected gene causes a particular disease.”

“Advanced genetic technologies have accelerated the discovery of genes responsible for diseases like epilepsy, autism, intellectual disability and other neurological disorders. But the number of genetic conditions in which we have functional understanding of the mutated genes can be counted on two hands.”

The most severe form of autism spectrum disorder (ASD), autism is a pervasive developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often by the presence of repetitive, stereotyped behaviors. The role of genetics and environmental factors in its cause is still being studied while theory factoring on parental practices has long been disproved.

Symptoms of autism improve with treatment and with age. Children whose language skills regress before the age of 3 may develop a higher risk of developing epilepsy. Adolescents may become depressed. Services and support are then vital for them to be able to work successfully and live independently. Autismspeaks.org has listed the various sites linking to how technology can assist PWDs with autism.

Portable computers—iPad or tablet—can encourage communication; the screen just have to be touch to be activated. There are apps that come with plenty of pictures, too, for beginning language learners or scheduling apps with visual support. Recently, Drs. Connie Kasari and Ann Kaiser along with team members, Drs. Charlotte Mucchetti, Stephanie Shire from UCLA and Dr. Courtney Wright from Vanderbilt University have found out that speech generating devices (SGD) aid social communication.

These application programs are listed in this site while the suggestions on how to set up a portable computer are discussed in another.

Meanwhile, Rosalind Picard, founder of the Affective Computing Research Group at Massachusetts Institute of Technology’s Media Lab, is finding out how a facial recognition software with Google Glass can be used to identify emotions. Other devices can also teach simple tasks, social skills, interaction with a computer-simulated environment, or steps in a specific activity such as robots, social stories, video modelling, and virtual reality.

“Autism is like a rainbow. It has a bright side and a dark side. Even though it can mean rough weather, it can be beautiful.” ~Lacy Bella Designs